Monday, December 21, 2015

My visits to
Cancer Treatment Center of America have become fairly routine. My husband and I follow my schedule, going
from floor to floor, clinic to clinic for my various appointments. This visit was a little different. I left my husband at home and took my
mom. Actually, she took me. During my darkest times this year, my mom
came over nearly every afternoon to help care for me, relieving my husband so he
could work and do necessary errands. She
shared the duties with two lovely friends of mine. When I ended up as an inpatient at CTCA in
March, my mom and stepdad traveled to GA to see me. My mom didn’t get to see much of the
treatment center because she stayed with me in my hospital room. (Sometimes,
despite our age, we just want our moms)
I really wanted her to meet the people who’ve helped me so much at CTCA
and who spoil me with kindness and love.

We headed
out bright and early in the morning with our sights set on Georgia. We were so excited, we gabbed the whole trip
about nothing and everything, giggling like little girls. When we finally arrived, we unloaded the car
and checked ourselves in. We unpacked
then made a quick trip to a couple nearby stores before dinner. As soon as we walked into the café at CTCA, I
spotted our friend, Jeannie. She
welcomed us with a smile and a hug.

Soon
we got more hugs from our other café friends, Alexis and Beverly. After enjoying our meal we joined the others
who were gathering to play Bingo. Many
people volunteer at the center to provide activities for patients and
caregivers such as Bingo, art classes, craft making, etc. It wasn’t long before my mom was yelling,
“Bingo!” and picking out her prize from the donated gifts on the prize
table. We played again and she yelled
“Bingo!” again. I was so happy for
her. We played some more and then again she was yelling, “Bingo!” This time my
happy face turned into a scowl.
Seriously? I was afraid we’d need
to request security to walk us out (ha-ha).
Her prizes were piling up on our table.
After that, she finally let some others win and we all had fun. We even discovered the ladies sitting next to
us live about 25 miles from us! What a
small world! After Bingo and meeting new
friends, we headed out barely able to carry my mom’s loot! We were dropping stuff and laughing so hard
we were snorting. Back at our room, we
got ready for bed and lay down for the night.

The
following day was my appointments. We
woke up and went to the café for breakfast, again seeing more familiar
faces. While I was standing in line, my
chiropractor came in and saw me. He came
over to say hello in case he didn’t get to see me this visit. I told him he was on my schedule in just a
couple hours. He said he’d just go back
to his office then and practice until I got there. When we finished our breakfast we went to the
second floor for my follow up appointment at 9:00 with my wound care
nurse. She hugged me, happy to see me
and was quite pleased with the progress she saw. Then we were on our way to see my
chiropractor. He made necessary
adjustments and discussed my progress and gave me some additional exercises to
do each day to provide more mobility to my right arm. 10:45 nurse assessment next with my friends
in Pulmonary. Without my husband to
direct me in the quickest way to get to the fourth floor clinic, I had to stop
and think for a minute. As I was thinking,
up walks my friend from housekeeping, Commie.
She was showing a new employee around but took five minutes to walk us
to the elevator that would open up in the fourth floor lobby – right where I
needed to be in about one minute! In pulmonary, a tech
took my vitals then my nurse came in to hug me and ask all her usual
questions. Then right on schedule at
11:00 my pulmonary doctor came in. Hugs
again, then I introduced my mom. After
removing my Pleurx catheter last month the doctor wanted to do an ultrasound during this visit to
see how much fluid had accumulated. He
asked my mom if she wanted to look at the screen. He described what she was seeing: my lung,
diaphragm, liver and the fluid…”Wow!” he said.
The fluid had diminished to about 10cc instead of increasing! There was only a little bit of fluid
there. Not even enough to drain. My doctor was pleasantly surprised. (Thank
You, Lord!!) (Happy dance!!) We said our goodbyes then headed
downstairs. My next appointment was a
lab draw on the first floor at 12:30.
That meant I had just enough time to grab something to eat.

We saw Yolanda getting some potatoes to take
back to her room. Yolanda is having
radiation treatments and has been at CTCA since October, I think. She said she wasn’t feeling the greatest and
potatoes was about all she could eat right then. She was a little nauseous, tired and wasn’t
able to taste her food due to her treatments.
I was glad to see her smiling and walking around. She was doing her best to overcome. After
I ate we walked to the Peach clinic and checked in for my lab draw. They called me back quickly and the nurse got
all the blood he needed effortlessly.
Afterwards, we had almost an hour before my next appointment so we
grabbed a drink from the coffee shop and sat in the gallery watching people and
relaxing. My next appointment was at
2:00 in the Magnolia clinic. I checked
in a little early and was taken back within five minutes. Dee weighed me first then took my vitals as
she always does. The scale showed I’ve
gained 40 pounds since my first appointment at the end of March. Fantastic progress! My mom and I are taken to a room where I wait
to see my PEC team. Right on schedule at
2:30 my oncologist, nurse and PA come in.
We all hug and I’m thrilled to see my nurse looking great! She has been undergoing treatment at CTCA for
cancer, herself. She is beaming with joy
and I have to get a picture with her!

My
doctor is happy to hear how well I’m feeling and to meet my mom. We discuss various issues and he gives me
some homework. He conducts his own
survey and asks how we feel he is doing as my doctor. I appreciate that he asks this directly. He has a quiet confidence and authority that
I value. I can’t imagine being more
pleased with his care for me. He gives
the term “health-care” the meaning it should truly have. Next my naturopathic doctor came in at
3:00. Another hug! She reviews my labs and other info then asks
some questions. She makes some
adjustments to my supplements then leaves us with a smile. At 3:30 my dietician walks in and I get
another hug. We discuss my labs, which
she says look wonderful, and my diet then she answers some questions I
have. After our appointment ends she
takes us to see my personal scheduler, Alethia.
She is a cut up and we all giggle as she adds future appointments to my
schedule, per my doctor’s orders. From her
office, we head for my 4:30 appointment in Infusion and wait in the lobby for
me to get my hormone therapy. One woman
is lying on a couch covered up and sleeping while another woman is talking on
her phone and crying. I’m reminded of
where I was health wise not that many months ago and how fortunate I am to be
where I am now. Eventually my nurse asks
if I’m ready. I endure the injection
that seems to go on and on. Finally I
get a Band-Aid and I’m done. It’s a
little after 5:00 now. We go down to the
first floor straight to the café. We
look around to see what we should eat and I spot Yolanda again. I ask if she’s feeling any better than she
was at lunch. No. But she is still sporting a smile and
positive attitude. She’s getting some
food to take up to her room again so she can rest. As I’m standing next to her a CTCA employee
walks up behind Yolanda and puts a fuzzy, colorful blanket over her
shoulders. Yolanda’s smile grows
brighter as the woman tells her she made it especially for her. Another example of true “health-care”. As we sit at our table eating, Mark, the
music therapist, stops by to remind us of Drum Circle at 6:30.

I tell him we plan to be there then he
introduces us to his friend (a patient) who is personally associated with the
Trans-Siberian Orchestra. Mark and his
friend tell us about their concert they recently attended and show us some
video of the concert. We finish eating
and make a quick stop at our room before heading off to Drum Circle. There are about 15 people in attendance
tonight. We all grab instruments to
play.

No experience required. We have a special guest, Dean, who’s just a
little guy with lots of energy. He makes
us all laugh.

My mom decided to color
while the rest of us made loud racket, but we all laughed and enjoyed
ourselves.

Some shared a little about
their experience at CTCA while I wiped away tears at hearing their
stories. One woman I met and talked with
afterward lives in Sanford, a city near my hometown. She said she’s scheduled for brain surgery
Monday (today). Again, I reflected on my own
situation, grateful I haven’t had to endure such a thing. After a long day of appointments, we call it
a day and go to our room for the night.
The next morning, as we prepared to leave for home, We bump into Yolanda
again. She is passing out little gifts
to CTCA employees and other people she knows.
I said to her that she looked like she was finally feeling better. She said she was still struggling. We encouraged her and gave her a hug as we
left.

As we
traveled back home to Florida, I thought of our visit. We enjoyed meeting many new people and we
were encouraged by many others. So many
little joys had added up to make a delightful trip despite where we were and
why we were there. I thought of Yolanda. Even though she had not been feeling well,
she refused to let it overcome her. She
persisted in spreading love and joy. All
these things reminded me of a card I keep that my grandparents sent me many
months ago. This is what it says:

Having a beautiful
life isn’t so much about getting that one big thing

Monday, December 7, 2015

As I write this, I’m traveling home from my most recent 4
day/3 night retreat at the Cancer Fighter Resort (AKA Cancer Treatment Center
of America – Newnan, GA). I’m relaxed,
refreshed and full of joy! Sometimes,
my neatly organized schedule gets abruptly rearranged during my visit and it
happened this time too.

CTCA front entrance

During my previous trip, my pulmonary doctor was pleased to
hear that my breathing was getting easier.
I told him I didn’t feel like fluid surrounding my left lung (if there
was any remaining) was hindering my breathing any more. He told me he would remove my Pleurx Catheter
if I could go until my next visit without having to drain. He scheduled me for surgery in anticipation
that that would be the case. When he saw
me in his office this time, he did an ultrasound and saw only a small amount of
fluid. Then, he gave me two options. The first was to follow through with surgery
the next morning, as scheduled or he could pull the catheter right there in his
office with no numbing meds so I could have the entire next day free of
appointments (the whole day had been set aside for surgery and recovery). I hesitantly agreed to have him pull it right
then. It was quick and the pain was
tolerable. No tears. No surgery.
Free day tomorrow!! I was
ecstatic at this schedule
change! The Pleurx had been the last of
my cancer “accessories”.

Fluid I drained several months ago using my Pleurx. Ewww, it's foamy!

The following day, I went to a craft class, and then a
worship service at the chapel on site, had a music therapy session, attended a
cooking demonstration and played Bingo after dinner. I met several new people and enjoyed talking
with them and hearing their stories. The
next day was the rest of my appointments.
All my doctors were pleased with my continued progress and my blood work
looked fantastic, they said.

BINGO!

Chapel

My music therapist and I stole their guns and made them be in picture with us!

Later that evening I attended Drum Circle. Drum Circle has many purposes. It helps patients and caregivers to relax,
connect with others, release stress, etc.
We beat on drums, shake tambourines and sing among other things. This time was extra special though. After many people left, a few of us lagged
behind and chatted. One woman asked if
we would be her “live” audience as she tried to recite from memory, a poem she’d
written. She had been practicing alone,
trying to memorize it because at the beginning of the year she is supposed to
share it with her church family. I had
not met this woman before drum circle. But
I could tell we had some things in common.
She looked like me – short hair (beginning to grow back), petite,
smiling. She said she was nervous, as
she rose and stood before us. As she
spoke, her voice echoed some of my deepest feelings. Her poem, “Woman under Construction”, painted
the picture of her trials through cancer and God’s refining love transforming
her in the process. The longer she
spoke, the more I could not control the tears streaming down my cheeks. I’ve found it difficult to accurately
describe some of my physical conditions and emotions during my own fight to
non-cancer patients. But this woman knew
exactly. Her poem, a monologue of her
conversation with God lasted five minutes.
She had it memorized but spoke straight from her heart. We all congratulated and encouraged her. As I spoke to her personally afterwards, I
found we had much more in common – our faith, our love for exercise and health,
we are close in age, both have children and we both finished chemo around the
same time. She is currently having daily
radiation treatments. She has been at CTCA
since October (I think) and won’t finish until mid-December. Please keep Esther in your prayers when you
remember me. She blessed me
greatly!!

God has placed me in a great family at CTCA in GA. I’m always excited about going! Isn’t that strange?! Employees and patients, both are warm and
caring. From the valet, to the
housekeepers, to cooks, doctors, to security – they all ask what they can do to
help, if we need anything and how we are.
I guess I could keep to myself while I’m there, but I’d be missing out
on so much.

My housekeeping friend. She has remembered my name since April! She always greets us with a huge smile and a "How you doin'?" and leaves us with a hug.

I asked my husband to take my picture with this sign. CTCA is definitely a refuge area for paitents and caregivers too!

Wall sign leading to two places I go to every visit...Infusion (previously for chemo and now hormone therapy) and Wound Care to follow up with my wound care peeps, Beth and Stephanie.

Thank you for your prayers.
Thank you for your smiles. Thank
you for your hugs. Thank you for your
support. Thank you for your
encouragement. I thank God that you love
me so well. I love you back!

Sunday, October 11, 2015

I haven’t blogged in months.
I’m sorry. I started one a while
back but now it’s obsolete. I’m not even
sure where to start now.

I’m improved so much since one year ago. Here’s a short list of some side symptoms I’ve
had to deal with over the past year:

Weight – 84lbs (I tried not to have many pictures taken
then. I don’t want to be reminded how
awful that looked)

On oxygen 24/7

Pleural fluid around lungs prevented them from expanding
much. Breathing and talking were such an
effort. They would tire me out. (Thanks to those who were my temporary voice!)

Pain. Sometimes
excruciating. In bones, tissues,
etc. Pain meds were trial and
error. Some wouldn’t touch the pain and
some made me have nightmarish dreams or see a naked family of four under my
hospital bed (no joke). I was afraid to
sleep some nights so I would try to stay awake.
I hated how pain meds made me feel.
Isolated, oppressed, depressed, and nauseous. I felt trapped inside myself. I wasn’t me.

My physical body was so weak that I was in a wheelchair for
a short while when I got out of the hospital in April.

I needed help with self-care activities.

I was unable to lay down for eight months or so due to the
fluid around my lungs. When I tried, I either
couldn’t breathe or would cough constantly from my lungs trying to expand.

My heart rate was increased.
A side effect of the pleural fluid.
A normal heart rate is around 60-100 beats per minute. Mine was over 100 and once it got up to 150
while I was sitting still. That’s not a
good feeling. Currently, I’m happy if I
see my heart rate under 95. That’s still
a work in progress.

There were a few months that anxiety had a grip on me. I’ve never dealt with that before. It was horrible! I couldn’t go into a bathroom without panicking. My heart would race and I’d start
sweating. I’d call out for someone to
come help me by bringing me ice or something to fan me and I’d just want
someone there with me. Normally, I like
to be outside doing things, but I couldn’t bring myself to go outside. It was a scary thought. I eventually ventured out onto the porch,
then the yard. It was all I could do to
sit at the table for a meal. (Sorry for
being so weird about it when I was at your house, Pam.) I felt like everything was too close to me. I would push my plate and other stuff on the
table away from me or I’d keep moving stuff around. When I started going out in public I had to
work myself up to it. At first, I’d only
go to church. I’d have to allow myself
lots of extra time to get ready. That
way I wouldn’t have to rush and get more anxious. I had to plan out what I would wear and take
with me and when I needed to leave so I wouldn’t have to think about it that
day. I had to see it on paper to prepare
myself mentally. Then I’d have to take
an anxiety medication to deal with it all.
A person coming up to hug me or encourage me was very overwhelming…and
these are people I consider close like family, not strangers.

I’m so thankful that’s in the past and that
the people around me loved me enough to help me through the fear, isolation,
weirdness, bossiness, attitude and ugliness of it all. I was not myself. I knew it but I wasn’t able to get past it
until I decided I no longer wanted to be a slave to it. (Cue the song “No Longer Slaves”!) https://youtu.be/f8TkUMJtK5k

Thankfully, the picture is quite different
now. My recent tests show “dramatic
improvement”. My oncologist’s
words. My lung has expanded greatly. Breathing is much easier. I still get out of breath at times but it
continues to improve. I’m still draining
fluid periodically from around my lung (I have a Pleurx catheter surgically
inserted between my lung and pleura).
The amount of fluid is lessening as my lung continues to expand. Originally, the doctor’s weren’t sure if my
lung would re-inflate much after bearing the weight of the fluid. All my doctors are pleased with my weight gain. I’m close to what I was before my diagnosis. My PEC team (oncologist, naturopath and
nutritionist) still guides me at each follow up visit. My immune system and overall health is
bolstered with high quality supplements like COQ10, fish oil, curcumin, turkey
tail (mushroom), etc. There is still a
healing wound on the right side of my chest.
I still see my wound care nurse at each visit too. I finished chemotherapy finally so the picc
line in my left arm has been removed.
What a relief! It had to be kept
super clean and flushed each day with saline.
Neuropathy I had been having in my fingers is gone. I no longer need home health, which I’m glad
for but I miss seeing my nurse, Florence.
A few weeks ago my oncologist ordered new, current biopsies for genomic
testing. This reveals DNA and other
information to help the doctor treat the patient more efficiently. After chemo I began a hormone therapy to
suppress estrogen and my doctor wanted to confirm we were using the best
treatment. I’m also getting my hair
back! Yay! I return to CTCA (Cancer
Treatment Center of America) frequently for testing and follow ups with my
doctors. It’s such a great place to be when having to deal with the stresses of
cancer.

Thanks again for your support, prayers, encouragement and
mostly for your love. You inspire me to
try to love as much as I am loved! I
feel like the richest person. All the
money in the world can’t buy this. To
those from CTCA reading this: I cannot
fully express my gratefulness to you for helping me, encouraging me, hugging
me, asking if I’m okay, smiling at me, praying with me, recognizing me (after I
lost my hair),bringing my lunch up to Infusion while I was having chemo, joking with me, cleaning my salad off the
floor, getting me mac and cheese that was only for inpatients when my tooth was
hurting too much to eat hard foods, coming to play guitar in my hospital room
to relax me, introducing me to your children, telling me about your family,
being a listening ear and treating me like your own family (Dr. McKnight, Dr.
Spevack, Ms. Erin, Lakeitha, Dee, Alethia, Dr. Bechara, Dr. Parks, Kim, Carol,
Lorrie, Ms. Claire, Jeannie, Alexis, Beverly, Kathy, everyone in the kitchen,
Dr. Bernstein, Dr. Steingraber, Dr. Kelley, Dr. Schofield, Joey, Commie, Lyn,
the bingo ladies, Ms. Beth and Ms. Stephanie, Alanna, Ms. Ashley, Tondra, Mr.
Chip, Mark, my respiratory therapist, the woman in EVS who made us a home
cooked meal, LizAnn..).

There is a tradition at CTCA when a patient finishes chemo
or radiation. It’s called the ringing of
the bell. After four and a half months
of aggressive chemo infusions, I walked out of the Infusion clinic and rang the
bell that hangs on the wall loud and proud!
All the staff, my husband and my son clapped and cheered with me. They gave me a t-shirt. They took my picture. I couldn’t see too well for the tears in my
eyes but I was smiling big. I will leave
you with the story of “Two Horses” that hangs on the wall with the bell.

“There were two horses in a field. From a distance,
each horse looks like any other horse. But if you get a closer look you
will notice something quite interesting… One of the horses is blind.
His owner has chosen not to have him put down, but has made him a safe
and comfortable barn to live in. This alone is pretty amazing. But
if you stand nearby and listen, you will hear the sound of a bell. It is coming
from a smaller horse in the field. Attached to the horse’s halter is a
small, copper-colored bell. It lets the blind friend know where the other horse
is, so he can follow. As you stand and watch these two friends you’ll see
that the horse with the bell is always checking on the blind horse, and that
the blind horse will listen for the bell and then slowly walk to where the
other horse is, trusting he will not be led astray. When the horse with
the bell returns to the shelter of the barn each evening, he will stop
occasionally to look back, making sure that the blind friend isn’t too far
behind to hear the bell.

Like the owners of these two
horses, God does not throw us away just because we are not perfect. Or because
we have problems or challenges. He watches over us and even brings others
into our lives to help us when we are in need. Sometimes we are the blind
horse, being guided by the little ringing bell of those who God places in our
lives.

And at other times we are the
guide horse, helping others to find their way. Good friends are like
that. You may not always see them, but you know they are always there.

Please listen for my bell, and
I will listen for yours”.

The bell

My cousin Debra, visiting me during a chemo infusion

The main hall at CTCA called the Gallery

My chemo infusion suite!

Infusion lobby

Driving up to CTCA's front entrance

Main entrance at CTCA (entrance to kitchen-left, entrance to dining room-right)

Guest Services desk (left)

Nurse friends from Pulmomology

My care manager (left) and my oncologist (right)

My nutritionist

My personal scheduler for all appointments! She is a bright ray of sunshine!

My tech (left) and nurse (right) for chemo infusion. You may notice Joey, the tech, from the CTCA commercials.

Kathy delivers meals to the patients if they aren't able to get to the cafeteria due to their infusions. My infusions lasted approximately six hours!

My tall friend, Jeannie. She treats me like a queen. I always look for her smiling face when I'm at CTCA.

Sunday, June 28, 2015

So much has been happening since my last blog a month
ago. I’ve had many improvements in my
health.

·I’ve been gaining weight. I’m triple digits now, baby!!

· I’ve been
able to cut down on using supplemental oxygen.

· I’ve been
going out more. Mostly for errands, but
I did go to dinner when some friends invited us over.

·The tumor markers have continued to drop. Two tumor maker tests are done with each lab
draw and the markers indicate the spreading of disease if they increase or the
decline of disease if they decrease.

· After
about a five week period of having no fluid around my lungs some fluid has been
accumulating again. I’m glad my
pulmonary doctor advised against removing the pleural catheter back then. I’ve been draining 200-500 mls (approx. 6-17
ounces) of fluid about every five days recently. Back in October 2014 when we first discovered
the fluid on an x-ray I went to the hospital and had two liters drained
off. Imaging the trouble I had breathing
then by thinking of a two liter bottle of soda lying on your lung as you try to
breathe! I’m thankful I’m able to drain
the fluid now if any accumulates.

·Lastly, my recovery time after chemotherapy has
been decreasing. At first it took about
eight days for me to recover, but now it’s down to three or four days. Side effects I’ve experienced other than
losing my hair are muscle/bone soreness, flushing, numbness in my fingertips,
mild loss of taste, hot/cold flashes and emotion overload (this one is always
fun for my husband!). I did have nausea
the first time and one instance of diarrhea also.

Some of the improvements I mentioned may not
seem like much, but now I recognize how much I took for granted when I was
healthy.

We’ve added hyperthermia to my treatments each time. Hyperthermia is a form of radiation but can
be done two ways. One uses micro-waves
and the other uses hot water. I have the
latter. I lay on a table and six temperature
sensors are taped to my torso and chest. Then a large 18”x18” plastic bag filled with
water (similar to a hot water bottle) is placed on top of the sensors. Tubes are attached to the bag and are
connected to a machine that heats the water and regulates the temperature to
109 degrees. Once the sensors read a
temperature of 109 degrees the clock begins.
The table is inverted (to help situate the water correctly over each
sensor) and I stay that way for one hour. I can pick a movie to watch or I can sleep or
choose some soothing music to listen to.
Except for being inverted (it’s not much), it’s mostly a calm, soothing
treatment that’s warm and relaxing. What
if you have to pee, you ask? That was my
question too. I’m supposed to drink at
least a couple quarts of water each day!
I was about 40 minutes in when I asked that question. We had to take off the water, unhook the
sensors, level the table, get a gown on and walk down the hall to the
bathroom. Then redo everything to hook
me back up and wait for the sensors to reach 109 degrees again then start the
clock for the remaining time. The procedure
isn’t supposed to be broken up like that so the nurse said I’d have to use a
bed pan next time!! In the future, I’ll
cut my water intake that day!
Hyperthermia is done within 24 hours but preferably right before or
right after chemotherapy. It heats up
the cancer cells making them more vulnerable to the chemo toxins.

I leave soon for my fifth treatment at CTCA. My doctor has several tests and scans
scheduled prior to my scheduled chemo, which he’s actually called ‘tentative’
depending on my results. We will discuss
future treatment options this visit.

Last visit I finally did something I had been longing to do
on the previous trips…BINGO!! Yeah! There are always activities going on at CTCA
that anyone can participate in. I’ve
seen Bingo going on several times (in the dining room) when I’ve been eating
and I’ve wanted to play but I’ve been too tired. I finally decided to jump in and have some
fun! I ended up winning twice. I got to pick my prizes. There were some really nice prizes. My husband didn’t stay to play. He went back up to our room instead. After I had been gone for a while he came
back down to bring me my room key so I wouldn’t have to wake him up if I came
in late. But when he got to my table I
was nearly falling asleep over my bingo card!
He kept pointing out calls that I had on my card but wasn’t seeing
because I was deliriously tired! Haha!
It was 8:30pm. Earlier that day,
I had chemo and included in the ‘pre-meds’ that I was given was Benadryl. I’m a lightweight when it comes to medication
so it was all I could do to stay awake. I
had so much fun playing and met two couples also. It’s easy to meet people at CTCA. Most people are very friendly. We met another man on the elevator who shared
his amazing story with us. We ended up
praying with him and rejoicing with him over his healing progress. CTCA has such a positive and supportive atmosphere. I get excited to go before each trip!

We’ve received many gifts from you. Financial gifts and other gifts too…protein powder,
clothes, books, hats, scarves, visits, meals, etc. Thank you! Thank you! Thank you! You’ve blessed us so much. Last trip there were a few people who gave us
some money or made a donation using Go Fund Me right before we left. It turned out to be the exact amount we
needed to pay for lodging, gas, supplements and meals! God is so amazing to supply for what we
need!

In closing, I thank you for taking time to read about my
progress. I appreciate the messages I
get with questions or congratulations.
You really make me feel special to have so many that care about me. I’ve included a few pictures for you. I wish you could all come with me to CTCA and
experience these wonderful things I’m writing about. The next best thing is sharing pictures instead. Shown below are the cafeteria and the
reception desk at the Infusion Clinic where I go for chemo and vitamin
infusions. Lastly, is a picture from a
friend that brought a huge smile to my face.
I don’t support Relay for Life for personal reasons, but my friend participates
each year celebrating her mom’s VICTORY over cancer. Below is a picture of my friend’s
contribution to the relay in my name. I
love what it says. If you talk about me,
use words like ‘winning’, ‘healing’, ‘fighting’ and ‘overcoming’. The Bible says the tongue has the power of
life and death, so use your tongue to speak ‘LIFE’ for me!!

Upon returning from this upcoming visit to the cancer
center, I’ll try to update you sooner rather than later.

Monday, May 18, 2015

I'm back finally to post an update! My last post was prior to my initial trip to Cancer Treatment Centers of America in Georgia. My first appointment was in March. I was scheduled for three to five day of appointments with various doctors for evaluation and testing purposes. CTCA is renowned for their work treating advanced stage cancers. We traveled to GA a little nervous and a little excited. They had prearranged our lodging and had us staying at a nearby resort. I was quite impressed, but with things so spaced out, I found myself more winded than normal as we walked from the parking lot up to our room or to the resort restaurant for breakfast. I had to stop several times to catch my breath. Also, the heat was making it worse. Getting in the hot car seemed unbearable. I was feeling faint and lightheaded. We soon realized that my oxygen was dropping quite low when I exerted any amount of energy. We went to urgent care on site at CTCA and I was eventually admitted to their hospital. Because of all the tubes and things connected to me, I was not allowed out of bed without a nurse except to use the bathroom. The pleural effusion issue on my left side was getting worse and needed to be dealt with asap. The fluid pushing on my lungs was making it hard for me to breathe. After consulting with a few doctors, we decided to have a Pleurx catheter inserted (in my side) to drain accumulating fluid, as needed. I didn't like the idea of having a tube sticking out of my side but I did want to breathe so it was a no brainer. It was a fairly simple procedure...I think! I was asleep! Fortunately, God gave me a highly accredited pulmonary doctor whom I've been extremely pleased with. A week and a half in a hospital bed was not good for my back or my spirit. CTCA is known for the comprehensive care they offer. During my stay they provided massage therapy and music relaxation therapy. The massage was great but I really enjoyed the music therapy. They sent an acoustic guitarist to my hospital room and he strummed anything I requested. He even came back again later to show me he had taught himself a song I requested that he didn't know. After talking to him, we learned that he was a worship pastor at a nearby church. Upon my release from the hospital, CTCA moved our lodging to their on site guest accommodations which was great! Everything is under one roof so we didn't even have to leave the building to go to my appointments. They set my room up with oxygen since I would be using it 24/7 for the time being. They gave me a wheelchair to use because I was already weak going in, but after 10 days in bed, my back was not strong enough for much walking.

The days that followed were busy with appointments and tests. I met my PEC (Patient Empowered Care) team. This is my personal team of doctors who meet together to determine the best care for me in my particular situation. I have a highly accredited oncologist, a naturopathic doctor, a nurse and a nutritionist. Since CTCA provides comprehensive care I also have doctors and other medical professionals that I meet with periodically and as needed. They include a chiropractor, a pulmonologist, a wound care nurse, a psychiatrist, a massage therapist and an occupational therapist. Each one has exceeded my expectations. Since our first visit was three weeks instead of three days, we'd often pass these people in the center and say hello. Some have come to know us by name and we will stop and chat.

The tests I had included all kinds of scans and blood draws. A Picc line was put into my left arm for infusions and future blood draws. None of this was easy since I don't like small spaces and laying flat is difficult with a pleural effusion. I made it through and made it home after the three weeks. My first round of chemo had been the day before we left. Twenty four hours later I received an infusion of vitamins and something call Nuelasta http://www.neulasta.com/what-is-neulasta.html .Then we headed home. I was happy to see home but was experiencing so many discomforts it was overwhelming. Nausea had set in on the drive home, I was flushed. I was hot. I was cold. I was an emotional wreck - crying for my mom! During the night I would wake up my husband and call him by name (so he'd wake up) to help me go to the bathroom. Twice, I called out for my mom instead of him. In his groggy state, he'd say, "I'm NOT your mom!". Heehee. I was so weak I needed help walking to keep me stable. I didn't know how I'd make it from one day to the next, honestly. Even though loved ones were with me, I felt so alone. I was desperate for encouragement. Knowing that God was my source of life, I recognized that others could help me physically but He literally was sustaining me with every breath. Having a pleural effusion, my doctor likened it to slowly suffocating. It's scary to not be able to breathe very deeply because it affects talking, walking, coughing laughing, etc. I started searching out scripture from the Bible relating to life, breath, health, and healing. I wrote them everywhere I'd see them. With the little breath I had, I spoke them out loud, claimed them as applying to me and thanked God for every breath, for His healing and for sustaining my very life. I wrote my own declarations and every day, morning and night, I declared them along with the truth of God's Word in those scriptures I had written down. I declared things like: I am getting stronger every day. I can breathe deeper every day. Excess fluid is being dried up where it should not be. My back is getting stronger. There were many others. Even thought I felt so bad, I would try to get my mind off of it and think of things that were true according to God's Word...I am more than a conqueror, I am victorious, I am healed, I am rescued, I am loved, I am not alone, etc. I sounded like a crazy person, but I would speak these aloud anytime I needed to and if that meant during dinner, then I'd do it. My life depended on it.

I've had two treatments now and go back very soon for my third. My second treatment was not as harsh as the first. I was stronger when we went back the second time. Instead of sitting in the wheelchair, I pushed it, using it for support (and for carrying all my stuff around like a bag lady!) When I saw my pulmonologist on our second visit, he did an ultra sound of my lungs and saw NO FLUID!! It had all dried up! Humble tears streamed down my cheeks as the doctor and his nurses rejoiced with me. I thanked God again for drying it up and healing me. Remember my declarations? My oncologist was very pleased with my healing progress after just the first treament. He suggested a total of four to six treatments every three weeks. After more tests, we'll determine where to go from there.

I could tell you story after story of the staff at CTCA going the extra mile, but this would be too long. I'm amazed that there is really a place that exists where no one speaks negatively, even the housekeeping staff ask if there is anything they can do for you. The staff are all non smokers, they don't wear perfume or anything scented (due to patient sensitivity) and I've had at least half a dozen staff tell me this is the best job they've had. The majority of the cafeteria food is organic. It's freshly prepared by chefs, not out of boxes and frozen packages. Grass fed burgers, vegan burgers, mahi mahi, NY strip, whole wheat homemade pizza, all kinds of veggies, several pasta and veggie salads, etc. Patients meals are free and care giver's meals are 60% off. On our last trip my husband had a lunch of seared tuna, jasmine rice, mashed potatoes, steamed broccoli and a salad and drink for $3! Also, while I was hospitalized the cafe would send up someone to give me a menu and take my order for each meal. For breakfast I could order eggs, any style, or any style omelet, with all the sides to accompany it. While I'm getting my chemo infusions they come and take my order for meals too. (chemo infusions for me are about six hours) During my last chemo, I even had a massage. I'm amazed at the care given to patients at CTCA. I'll post some pictures below (even one of me holding my cute grandson!)

I have already lost my hair and I wasn't sure how I'd feel about it but I have to admit that I'm enjoying it. I don't have to wash it, comb it, style it or pack any hair care items when I travel. I'd prefer to show my naked head everywhere but sometimes it gets cold. Also, I have other "accessories" like my Picc line and oxygen and I understand it might be a shock to some people. I have already had to explain to some kids at church that I'm taking some medicine that made my hair come out.

I'll keep you up to date as I continue to heal. Please don't be afraid to ask me questions - I like it. Thank you to everyone who visited me in GA (the Zapatas, the Tuggles, my grandparents, the Beccues, My uncle Ken, and our new friend, Devin) and everyone who visits me here at home. Your visits are keeping me encouraged and lifting my spirits. Also, thank you the your donations. They have helped us tremendously. We have to pay lodging, travel expenses and supplements (insurance doesn't cover these). If you'd like to use Go Fund Me to donate, I'll post the link below. I need to update the description on there since it doesn't reflect the change in my treatment now.

My heart is so full of love for all of you. God is doing so many wonderful things and He has does many of them through you! Thank you for caring about me. Darlene

Tuesday, March 17, 2015

I’d like to illustrate a picture for you using two true stories. One is about my neighbor who is a wise man around 80. Daily he travels the fields & pastures behind his home with his dog & shotgun. No, he isn't hunting, he’s just keeping any eye on everything. But he is prepared and armed to take action if needed. The second story is of an elderly man my husband did some work for recently. The man came in a little after dark one day from working in his fields. Inside his house he was surprised to find a vagrant man along with the man’s bicycle and bag! The vagrant informed him that he was going to sleep there for the night. Our elderly friend quickly went to retrieve his shotgun and replied “This says you’re not!” The vagrant ran out of the house, leaving his bicycle and bag.

So, my neighbor stays on guard, looking to eradicate trouble when it pops up. But our elderly friend doesn't seem to be as alert. Hopefully he’ll be locking his doors more.

Lately, I've felt more like our friend & less like our neighbor. I've been letting negative thoughts in my mind, then considering them instead of immediately eradicating them. I failed to see the damage being done. Eventually, I succumbed to a state of despair and hopelessness. These attacks on my mind were constant. I found some Bible verses regarding health, life, etc. and wrote them down. I began speaking each verse out loud to my soul and contrasting each attack on my mind with a truth from God’s Word. I also had some more physical changes to make—like getting dressed each day, instead of wearing pajamas all day. In the movie Shawshank Redemption, Morgan Freeman’s character refers to our choice to “get busy livin’ or get busy dyin’”. I’m ashamed to say I had not been busy livin’. It’s not easy to make a transition. I’m so grateful for the support and encouragement I've been given. Once I recognized and admitted my problem, help started to pour in. Last week another encouragement came. I found out I've been accepted for testing and evaluation at the Cancer Treatment Center of America, near Atlanta. During next week we should have more information on recommended treatments. I like the picture my friend had in her mind of me showing up at the Cancer Treatment Center:

Her picture was me, walking through their doors with about 300 of my family and friends behind me—all of us saying “We’re here!”

I will try to stay in touch to keep you all updated. If you have our number and want an update, please call. My husband doesn't text. I expect a visit from everyone. J I’m filled with love for you all. Your support and help mean so much.

Friday, January 30, 2015

That’s what I’m going to try to do—catch you up on what’s
been happening.

Back in November, my doctor sent me for a chest x-ray
because I was coughing, short of breath and unable to lay down (without losing
my breath).The x-ray showed a pleural
effusion in both pleural cavities.This
meant fluid was building around my
lungs (NOT in my lungs), putting pressure on them; making the lungs unable to
expand fully. The doctor sent me to the
hospital for a Thoracentesis, a procedure where a needle and catheter are
inserted through the ribs to the pleural cavity for the purpose of draining
excess fluid.The procedure itself
wasn’t too bad until the end, when two liters of fluid had been drained out and
my lung was trying to re-expand after having been collapsed under the weight of
the fluid.I coughed, struggling for
breath for at least 15 minutes.I was given another x-ray.After waiting for the results, I was told I
had a pneumothorax—a perforation of the lung.The doctor told me the perforation most likely happened during the Thoracentesis.He recommended I stay overnight in case of
any complications and have another x-ray in the morning.I agreed.At 8:00 AM, I went for another x-ray.Several hours later a physician’s assistant came to my room to say she
had reviewed the x-ray—on her phone—and
it looked fine.She said I “was released
to go home”.I’m not sure how she could
make out anything clearly on a cell phone, but I told her I wanted to see a
doctor and get their opinion.A couple
of hours later, around 2:30, a doctor came in and said she thought I should
stay.She showed us the 8:00 AM x-ray and
said the pneumothorax had not improved and fluid had filled the pleural cavity
again.

Many things with this hospital experience had been
upsetting.I chose to go home and
consult my doctor.After consultations
and some research, I decided to go to a different hospital.My doctor was now recommending a surgical
procedure to relieve the excess fluid called a Pluerodesis.A pleural effusion can occur in cases of
heart disease or cancer.If excess fluid
was going to keep occurring, we were going to have to take additional steps to
deal with it.

I went to the other hospital to have the Pluerodesis procedure.I sat in a hospital bed and walked the halls
for exercise for a week while they ran test, brought various doctors in for
consult and obtained medical records.Finally, I went in for surgery the day
before Thanksgiving.I recovered in ICU
for three days before they transferred me to the Step Down Unit.There I had begun breathing treatments to
help my lung expand again.Due to the
invasiveness of the procedure, doctors typically only do one side at a
time.My right side had the most fluid,
according to x-rays.Four days after
surgery, the surgeon removed the chest tube.A large tube had been stitched into my side to allow the fluid to
drain.

A day and a half later they sent me home.Six weeks later, I’m still recovering.My lung capacity is slowly increasing after
being under so much pressure from the fluid.This makes talking an effort.I
try to keep my breathing slow and regulated so my lungs aren’t stressed.I start coughing when my lungs are working
harder; trying to keep up with heavier breathing.Also, the cold weather and wind makes me
cough.My right side is still sore where
the chest drain tube was.The surgeon
said many nerves had been cut for the procedure and I’d most likely have some
degree of pain long term.

We’ve been busy since I came home from the hospital trying
to get to a cancer treatment center in Atlanta.You’d think it would be a fairly simple process, but we’ve had to take
step, after step, even to get where
we are now.Currently we are going back
& forth about insurance.Please keep
us in your prayers as we go through this process.

I want to thank all of the people who have blessed me during
these things.Without naming names, I’m so grateful to each person who
supported my GoFundMe account (setting it up, sharing it, contributing).When I was in the hospital, my Husband was
able to be there with me instead of having to work and we were still able to
pay our bills from the funds coming in.If you contributed money in any way, we are so grateful.Thanks to those
who check up on us, send sweet cards, steadfastly pray, run errands, encourage
us, visit us, make food for me, make liposomal vitamin c, sit with me, and bring me fresh squeezed
orange juice and clothes that fit better.I could just keep going.The list
is so long.I’ve also enjoyed visits
from family from Northern Alabama down to central Florida and many messages and
texts from friends all over.The
kindness and love poured out on me is overwhelming.My words are fewer these days, but please
know I love you right back!